COVID-19 Revealed How a Lack of Care for Seniors Affects Us All

My grandmother Dorothy Daly died in August 2016 at aged 93 years. Though she had dementia for the last few years, it felt too soon. Well into her 80s, my grandmother, whom we called Nanny, was the sharp, funny, and loving matriarch of our large Irish Catholic family. Her life was one of immense contributions and devastating losses.

From left to right: Nanny Daly and Peggy Lillis; Nanny Daly and Peggy Lillis; and Nanny Daly, Christian John Lillis, and Peggy Lillis.

Though Nanny had dementia, that wasn’t what killed her. In August 2016, Nanny fell, breaking her hip and wrist. Thirty-day mortality for someone her age with a broken hip is extremely high.^1,2 We debated whether to subject her to hip surgery, ultimately deciding it was worthwhile. After the surgery, she was transferred to a long-term care facility.

Not long after Nanny was admitted, my aunt arrived to find her in her wheelchair, lined up with the other residents. But she looked very different. One side of her face slumped and her voice was garbled. It was clear that she had suffered a stroke. The doctors confirmed that Nanny was unlikely to make a meaningful recovery. We moved her to hospice, where she died peacefully a few days later. I wonder to this day whether more could have been done for Nanny in her care. Prior experiences have taught me that can occur.

Six years earlier, in April 2010, my mother died from a community-acquired Clostridioides difficile infection. C diff is a bacterium present in the gut, and it can exist among the other bacteria, viruses, and microorganisms in the gastrointestinal system, many of which are beneficial. However, when the balance of our microbiome is disrupted, most often by antibiotics, the C diff bacteria can grow out of control, leading to diarrhea, fever, nausea, and potentially deadly colon inflammation and sepsis. C diff, once considered almost solely a risk to elderly and immunocompromised adults, was deadly and rampant in long-term care facilities until the early 2000s, when it began striking down younger, healthy people like my mother. C diff has killed hundreds of thousands of seniors since it was identified in the 1970s, with little public outcry. And C diff is only one of several health care–associated infections (HAIs) and increasingly treatment-resistant infections permitted to fester among our elderly.

COVID-19 ruthlessly exposed what many have known for years: We are failing to protect seniors from preventable and often life-threatening infections. Further, the elderly are not a minority population at 54 million (16%) Americans.²

Following the publication of To Err Is Human: Building a Safer Health System by the Institute of Medicine Committee on Quality of Health Care in America, clinicians, researchers, and a growing number of patient and caregiver advocates began to focus on the high number of HAIs in the United States. At that time, the CDC estimated that 3.5 million Americans were harmed by an HAI annually, with 42% occurring in long-term care facilities. The report estimated that better infection control across health care facilities could prevent at least one-third of these occurrences.³

An array of professional societies, nonprofits, and individual patient advocates spent the next decade passing state laws to increase surveillance of and accountability for HAIs, including public reporting. However, these laws focused on acute-care facilities, obscuring the growing, lethal effects of preventable infections among older people. More recently, the Centers for Medicare & Medicaid Services set rules requiring more reporting from long-term care facilities. Still, the reporting remains sparse, as only the reporting of urinary tract infections is mandatory. The rest of the data is reported voluntarily to the CDC’s National Healthcare Safety Network (NHSN).

The United States has an entrenched problem with the quality of care provided to our elders. Although Medicare is often held up as one of our country’s most effective social programs (and it is), decades of cuts and privatization schemes have led to a situation in which “beneficiaries tend to be sicker and [forgo] care more often due to higher costs than their counterparts in Europe and Canada,” according to 2017 International Health Policy report by The Commonwealth Fund. The report found seniors are sicker and more economically vulnerable in the US than in comparable countries, yet Medicare was noted to be less generous.⁴

Many preventable HAIs, including methicillin-resistant Staphylococcus aureus (MRSA) and C diff, have killed up to 60% of all elderly patients who contracted them.^5,6 According to the CDC, there are approximately 1.7 million HAIs annually and nearly 100,000 deaths.⁷ There are many reasons for America’s unwillingness to solve our epidemic of HAIs, including the fragmented and underresourced nature of our public health systems. Still, if HAIs mostly killed children or healthy adults, there would be much more action. But out of sight, in long-term care facilities or hospitals, our elderly are left vulnerable.

Reasons We Should All Care

If we’re lucky, we will all live to be elderly. Thanks to advances in sanitation, disease prevention and treatment, and hygiene, life expectancy in America is 78 years, and many live to be older.² When we are 70 and require minor surgery in a hospital, we all would like to be confident we won’t catch C diff and suffer for weeks before finally succumbing to the disease and dying. When we’re 85, we likely will want our experience of hospital stays to not pose potential life-threatening consequences in and of themselves.

Second, beyond our impending status as senior citizens, infectious diseases that mostly kill the elderly can also affect the general population. C diff was once considered a “nuisance” disease affecting primarily elderly patients and cured by additional antibiotics. In 1999, fewer than 800 deaths were attributed to C diff infections.⁸ However, over the next 7 years, that number would increase 8-fold, with more than 6225 C diff–related deaths in 2006.⁸ Despite this surge of increasingly deadly C diff outbreaks, the disease never captured the media’s attention as MRSA had, and as the Ebola and Zika viruses later would. So under the radar from 2000 to 2014, hospital-onset C diff cases more than doubled among Americans younger than 65 years. Although numerous doctors and scientists at the CDC and other organizations noted this rise, there was no compelling public action until after my mother died in 2010 at age 56.⁸

To prepare for the next pandemic and to provide our seniors the care they deserve, there are some important steps before us to follow:

• Politicize infectious diseases. Throughout the COVID-19 pandemic, we have heard many people from both sides of the aisle bemoaning its politicization. Still, infectious diseases are political and have historically played significant roles in regional and international politics and the economy.

A bubonic plague epidemic, referred to as the “Black Death,” completely destabilized Europe in the 14th century. It was a destabilizing presence in Europe, Asia, and the Middle East until the 18th century. With death tolls as high as 60% to 70% of the population in some areas, including the death of royalty and elected leaders, the bubonic plague shaped the politics and economics of entire continents. It also led to persecution of Jews, Romani people, lepers, and immigrants, leading to significant violence.⁹

Similarly, yellow fever in Haiti played a role in forcing out colonizing countries, eventually leading to its independence.¹⁰ In short, widespread disease has political implications whether or not we’re discussing it as such.

• Invest more money in public health at the state and federal levels. The US spends more money on health care at $3.6 trillion than any other nation, yet only 3% of that goes to public health and prevention.³ The CDC’s budget has remained flat since 2008 when adjusted for inflation—that means less money each year is being provided to protect a growing and aging population.

Per capita, we spend just $286 on prevention for each American. According to the Trust for America’s Health (TFAH), most states rely on CDC grants to fund their public health efforts. Most local health departments never recovered from the Great Recession more than a decade ago when they “lost an estimated 56,360 staff positions due to funding issues.”¹¹

The TFAH has an excellent and expansive set of investment recommendations that would greatly benefit efforts toward advancing public health and prevention, if implemented.¹¹ Similarly, state and city governments should explore how to raise or reallocate funds for their departments.

• Establish robust national surveillance and public reporting of all dangerous pathogens. Through various programs, including the Emerging Infections Program and NHSN, the CDC tracks a limited number of infectious diseases, many of which cause far less harm and death than C diff or MRSA. However, the nation’s public health surveillance and reporting systems have not been modernized in many years, with some states reporting infectious diseases via fax and mail.

Thankfully, there has been progress. A program called Data: Elemental to Health, which invested $1 billion over 10 years to modernize our public health data infrastructure, was folded into the 2020 CARES Act.¹² This is a great step, but additional resources will be needed to expand our tracking of other pathogens.

As Kevin Kavanaugh noted in a recent piece in Infection Control Today®, “After decades of reluctance to implement a national reporting system in the United States, we witnessed almost overnight the formulation of case definitions and comprehensive national reporting from all health care facilities. The onslaught of COVID-19 brought about this much needed improvement. Now, we must ask: Why has this not been done for other dangerous pathogens?”¹³

• Embrace mitigation over punishment. The primary penalty for hospitals (and not long-term care facilities) that fall into the bottom 25th percentile is having their Medicare and Medicaid payments cut by 1%. Although accountability is important, cutting funding—particularly based on infectious disease prevention that is already underresourced—can be counterproductive. In fact, fear of financial penalties has been known to lead some sites of care to forgo diagnostics testing that could reveal a high infection rate, which does not foster an environment of cooperation and transparency.¹⁴

Additionally, annual penalties do nothing for the patients and families who are left with the harm or loss caused by preventable infections. Rather than see hospitals and long-term care facilities punished for higher infection rates, we could see them as requiring additional resources and training to mitigate the underlying causes. But to do so, we would need a robust public health workforce that is prepared to provide this support.

References

1. Blanco JF, da Casa C, Pablos-Hernández C, González-Ramírez A, Julián-Enríquez JM, Díaz-Álvarez A. 30-day mortality after hip fracture surgery: influence of postoperative factors. PLoS One. 2021;16(2):e0246963. doi:10.1371/journal.pone.0246963

2. Underwood T. Forgotten seniors need time, care. Atlanta Journal Constitution.

October 5, 2010. Accessed August 9, 2023. https://www.ajc.com/news/opinion/forgotten-seniors-need-time-care/s6mdH3uUuYzZRcApmVYmvL/

3. Institute of Medicine (US) Committee on Quality of Health Care in America; Kohn LT, Corrigan JM, Donaldson MS, eds. To Err Is Human: Building a Safer Health System. National Academies Press; 2000.

4. Osborn R, Doty MM, Moulds DD, Sarnak DO, Shah A. Older Americans were sicker and faced more financial barriers to health care than counterparts in othe r countries. Health Aff (Millwood). 2017;36(12):2123-2132. doi:10.1377/hlthaff.2017.1048

5. McClelland RS, Fowler VG, Sanders LL, et al. Staphylococcus aureus bacteremia among elderly vs younger adult patients: comparison of clinical features and mortality. Arch Intern Med. 1999;159(11):1244-1247. doi:10.1001/archinte.159.11.1244

6. Jump RL. Clostridium difficile infection in older adults. Aging Health. 2013;9(4):403-414. doi:10.2217/ahe.13.37

7. Healthcare-acquired infections (HAIs). Patient Care Link. 2023. Accessed August 9, 2023. https://www.patientcarelink.org/improving-patient-care/healthcare-acquired-infections-hais/#:~:text=In%20American%20hospitals%20alone%2C%20the,99%2C000%20associated%20deaths%20each%20year

8. Dubberke E. Clostridium difficile infection: the scope of the problem. J Hosp Med. 2012;7(suppl 3):S1-S4. doi:10.1002/jhm.1916

9. Bosshart L, Dittmar J. Pandemic shock and economic divergence: political economy before and after the Black Death. Centre for Economic Performance. October 2021. Accessed August 9, 2023. https://cepr.org/system/files/2022-10/dp1805.pdf

10. Haitian Revolution. Encyclopedia Britannica. Last updated August 3, 2023. Accessed August 9, 2023. https://www.britannica.com/topic/Haitian-Revolution

11. The impact of chronic underfunding on America’s public health system: trends, risks, and recommendations, 2020. Trust for America’s Health. 2020. Accessed August 9, 2023. https://www.tfah.org/wp-content/uploads/2020/04/TFAH2020PublicHealthFunding.pdf

12. Holubowich E. Data: Elemental to Health. Association of Public Health Laboratories. 2023. Accessed August 9, 2023. https://www.aphl.org/policy/Advocacy_Documents/DSI%20OnePagerI_

FINAL%20(002).pdf

13. Kavanagh K. National reporting system for all dangerous pathogens needed. Infection Control Today. July 20, 2020. Accessed August 9, 2023. https://www.infectioncontroltoday.com/view/covid-19-experience-suggests-need-for-national-reporting-system-for-dangerous-pathogens

14. Montgomery T. Claiming our power as health citizens in an age of overdiagnosis. December 5, 2019. Accessed August 9, 2023. The BMJ Opinion. https://blogs.bmj.com/bmj/2019/12/05/tara-montgomery-claiming-our-power-as-health-citizens-in-an-age-of-overdiagnosis/

About the Author

Christian John Lillis is executive director of the Peggy Lillis Foundation for C. diff Education and Advocacy, the country’s leading patient organization dedicated to ending harm caused by Clostridioides difficile infections.